Families on Disabilities Wait List Protest Budget Cuts

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The state provides services to about 10,000 adults with developmental disabilities.
But hundreds more are stuck on waiting lists.
And the governor’s budget has zeroed out funding that was supposed to end those lists.
NHPR health reporter Elaine Grant has more.

It’s a perennial problem: how to fund services for adults with disabilities like Down’s syndrome, autism, cerebral palsy and brain injuries.

The services range from occupational therapy and job training to round-the-clock care.

They’re designed to help people stay in their homes or their communities.

And that’s not only good for people, it’s smart money management, says Amy Messer.

She’s the legal director of the Disabilities Rights Center.

Messer4: Home and community-based care services have time and time again been shown to be far more cost effective than institutional services.

School systems take care of children with disabilities.

But a child’s 21st birthday can mark the beginning of a difficult limbo in which parents are left to fend for the kids themselves.

In 2007, both lawmakers and advocates for the disabled hailed the legislature’s decision to end the waiting lists.

It’s an expensive effort, requiring about $10 million dollars in fiscal year 2010 and $18 million in 2011.

But in the governor’s current budget proposal, that money is gone.

Governor Lynch wasn’t available to comment.

But his press secretary, Colin Manning, gave this rationale for the cut.

Manning1.wav: The governor took great care to focus on certain priorities, one of them obviously is trying to take care of our most vulnerable citizens. And in doing that, it’s forced some very difficult choices.

But MaryAnn Munroe-Sullivan says her son – and hundreds like him – ARE the most vulnerable citizens.

Sitting in hersprawling, slightly chaotic kitchen, she shows off a family photo.

Family.wav: This is my husband Gregg and these are our four adopted children, Andy is 20….FADE DOWN

At the center of the photo is Andy, a young man with a shock of black hair and a brilliant, lopsided grin.

He was a varsity athlete at Salem High, a vibrant, friendly kid who made the honor roll and loved to play the guitar and drums.

MaryAnn3.wav: So band practice was in our garage every day. He was a gem. :05

But one day in October of 2005, all that changed.

Horsing around with friends, Andy fell on a sidewalk.

MaryAnn1.wav: That curb hit his head. And it was just at the wrong spot. And he went into an immediate coma. And um, he was in a coma for six weeks solid.

Convinced Andy wouldn’t live, doctors tried to persuade his family to remove life support.

They didn’t.

And one day, Andy no longer needed it.

He can walk – ten steps or so, with help.

He can talk -- one word at a time.

And he can eat, but only one mouthful at a time, because he has trouble swallowing.

He lives at Crotched Mountain School, where he has 24-hour care.

Andy will turn 21 next February.

And Mary Ann has no idea what she’ll do then.

Neither do hundreds of other families in similar circumstances.

By the end of June, there will be more than 250 people on the developmental disabilities waiting list.

The next year, that number is expected to jump to 640.

The list is growing because of a huge increase in autism.

What’s more, many older parents are becoming too old to continue caring for their adult children.

Advocates for the disabled say the consequences of Governor Lynch’s budget cut could be dire.

Amy Messer of the Disabilities Rights Center says that some families will be forced to put their children into nursing homes or to quit their jobs to provide full time care.

Community-based care costs an average of $45,000 per person per year.

Nursing home care can cost the state more than one hundred and twenty thousand dollars a year.

Amy Messer:

Messer6.wav: There are a lot of ramifications when you say no community-based services, we’re just going to make people wait. Because in many instances, people can’t just wait.

Right now, advocates are working with lawmakers to bring some funds back.

State Representative Sharon Nordgren, a Democrat from Hanover, chairs the House Finance subcommittee that oversees the health and human services budget.

She had wanted to end the waiting list.

But now she’s struggling to come up with a balanced budget.

Nordgren5.wav: “Y’know, I would hope that we would be able to put some money back in, but it obviously is not going to be abiding by our hope in Senate Bill 138 that we would keep the wait to 90 days.” :12

For now, MaryAnn Munroe-Sullivan is planning to call Governor Lynch.

MaryAnn8.wav: I’m gonna say that I want to talk to you about this situation. If we as a community and a government can’t take care of the people who can’t take care of themselves, why are we even here? :12

Parents of disabled children hoping for a resolution now face a wait of their own.

Comments

I have a 47 year old son, who has an acquired brain injury. As my son is not able to care for himself, I have been his caregiver for the last 8 years. Considering my age, and the fact that I have cancer, I can no longer take care of him. Due to his condition, he can not live alone, and he can not live with me. What he needs is to live in a group home, with around the clock supervision, and qualified staff.

His financial assistance comes from medicaid. So it cost medicaid over $900.00 a day, for his board and care at the hospital. Where as with financial assistance from medicaid (a medicaid waiver) It would cost the state of New Hampshire half that amount for him to live in a group home. But with the wait list, and Governor Lynchs budget cuts, he has been in the NH Hospital for months. Currently costing medicaid over $900.00 a day! Does that make any sense at all!?